Q&A

What is a transplant house? A transplant house is a non-profit “home away from home” for eligible patients and their caregivers who are in the Madison area for organ, bone marrow or other transplants at UW Hospital & Clinics. A transplant house is not a medical facility. It is a caring environment that offers high quality, affordable accommodations for patients and their adult family members/caregivers. In addition to physical housing, the House offers hospitality, compassion and hope to support the healing journey for the patient and family. The support is provided by a small core staff, many volunteers and through interaction between other families facing the same challenges.

Restoring Hope Transplant House is designed to offer both private and community space. The facilities foster and support independence by providing shared kitchen and laundry facilities. Each guest will have a private room but may share a number of common areas including multiple living and tv rooms, dining rooms, sun porch and front porch where they can interact with the other guests.

Why is it needed? Transplant procedures are complex and can involve considerable time away from home as patients await and prepare for procedures, recuperate afterward and return for follow-up appointments. Some of a patient’s time in the area is spent at the hospital, but a good portion can be spent at local hotels while receiving outpatient care. The scope of medical care and the out-of-pocket costs can create additional financial challenges during what is already a very difficult time for patients, their families and their caregivers. The House offers patients and their caregivers a sense of community during an often long and difficult process. We have had repeat guests who have stayed here 30+ times. Most return for the family-like atmosphere while also taking advantage of the huge cost differential between the House and an average hotel. The well-being of the caregiver is another key and often overlooked aspect in the overall recovery of not just the patient but the entire family. This is an extremely stressful time for all but especially for the caregiver as they juggle the health of a loved one in addition to all of life’s challenges back home, with family, at work, financially and physically. The built-in sense of community and support that our transplant family guests will find here is something they simply cannot find elsewhere and it absolutely makes a difference in recovery.How many people could be served? Approximately 550 solid organ and bone marrow transplant procedures are performed in Madison each year. Since most of those procedures are performed for people who live outside the Madison area, at a minimum there is an estimated need for accommodations for days to months for patients and caregivers. Transplant surgeons and program staff in Madison have long seen a strong need for this type of facility to come to the Madison area and are eager to refer patients and help where they can. Restoring Hope Transplant House fills that gaping void in available affordable housing while also offering a built-in support system of caring and understanding. Are there other transplant houses? This is the FIRST house of its kind in the state of Wisconsin devoted entirely to transplant patients and families. Regionally, The Gift of Life Transplant House in Rochester, Minnesota supports families and transplant patients served at Mayo Clinic and there are now several others scattered about the country. Who is behind the effort to offer a transplant house in our area? The inspiration for ''Restoring Hope Transplant house" came out of a diagnosis of multiple myeloma for Wes Herbst. The support and hope the Herbst family received at The Gift of Life Transplant House in Rochester, Minnesota gave the whole family hope and encouragement. That experience led to developing a non-profit board of directors and meeting with hospital healing houses to begin the necessary work to start a transplant house in the Madison area to support the world-renowned transplant program available here. With the non-profit organization formed, a board of directors with very specific talents providing leadership and under the direction of Cindy Herbst as the Executive Director and Co-Founder, Restoring Hope Transplant House first opened its doors to guests in January of 2013. Restoring Hope Transplant House is supported by three staff members, a board of directors and a group of dedicated volunteers. The UW Hospital and Clinics Bone Marrow and Organ Transplant teams have been involved in the Transplant House since its founding. We are the referral of choice for UW Hospital. We are part of the Middleton Chamber of Commerce, University of Wisconsin Cancer Council and serve on multiple Hospital and Community minded committees. We also have strong relationships with all Donate Life partner organizations, Wisconsin State Lions, Lioness & Leos groups as well as Rotary.

Who is managing the efforts to continue making this House a reality for families in need? A non-profit corporation was formed in the name of Restoring Hope Transplant House, Inc., who purchased the house. The management team of Restoring Hope Transplant House, led by Executive Director Cindy Herbst, has surrounded themselves with an exceptional team to guide them, including accounting, banking, marketing and strategic planning all with expertise in non-profit organizations as well as experienced attorneys. The board of directors for the House includes devoted members from the Madison area that have previous board experience as well as members involved in transplant and construction fields. They have the enthusiastic support of local transplant care providers.

What is needed to keep the doors open and Restoring Hope Transplant House operational? As a non-profit, various forms of funding are essential on any and all levels in order to continue offering this home to families in need. In addition to the funding required to offset regular operational costs, we also have very exciting expansion plans for a renovated 16 bedroom home ready to go to construction once the necessary funding needs have been met. Storytelling and spreading the word about the house to both statewide communities as a resource for families and to potential donors is also critical for the future of the House. The vision for Restoring Hope Transplant House is one of community serving community. Volunteer support will also be an essential part of keeping the House operational. We envision the house “belonging” to the community in the best sense, giving as many people and businesses in the area as possible the opportunity to participate in supporting the community of transplant families.

What sponsorship opportunities exist? Sponsorship opportunities include individual or corporate naming rights for various rooms and other visible areas in and around the House. Regular monthly pledges can be made and are critical to assist with various house-related expenses and supplies. Third party events that support the mission of the House are also a great way to get a group or business involved in supporting a great cause. In addition to modest revenue generated from guests of the House, funding will be pursued through endowments, grants and aggressive local fundraising.What does it cost to operate the House? We have now been operational since January 2013 with lean budget principles and practices. We are pleased to find that our operations budgets prior to opening have been sound and we continue to make minimal adjustments as needed. Our 990 information is available upon request.What have you learned about caring for transplant families since opening your doors? · They are relieved to be in a home-like setting as opposed to a hotel that lacks many of the comforts and amenities of home such as access to our stove, oven, kitchen utensils, refrigerator, freezer, dishwasher, sink, coffee maker, washer and dryer and more · They find enjoyment and comfort in visiting with other guests who are going through very similar journeys. From early morning breakfast conversation gatherings at the table to watching Badgers and Packers games with people from all parts of Wisconsin in the tv room to putting a puzzle together in the living room with someone whose husband just had the same transplant as yours to slicing up a freshly-baked pie and sharing laughs with a house full of others, there’s something very magical and soothing about people facing challenges together. · Their friends and family back home are relieved to know that they are well cared for while they are away from home and loved ones. Oftentimes, we host single caregivers while a loved-one is in the hospital. It is a relief for all to know that a caregiver or patient is not facing this daunting journey alone. · Saving money means everything in uncertain times. To get home-like accommodations at a fraction of the cost of a hotel is very meaningful to our guests – especially those who are in Madison long-term. · Everyone loves downtown Middleton. So many amazing restaurants within walking distance, fun shops, bank, post office, walking and biking trails and a very safe and friendly community. All of our guests feel very at home in this community. · All of our guests come as complete strangers and so many leave as dear friends. It’s a credit to the environment created by those who stay with us and the compassion of the transplant community.